Parents for and against MAID for mature minors after twin tragedies
Mike Schouten and Caroline Marcoux have never met, but two years ago — a few months apart — each lost their 17-year-old son to bone cancer.
Now, as the Canadian government considers extending medical assistance in dying (MAID) to mature minors — that is, people under the age of 18 — Schouten and Marcoux are campaigning on opposing sides of the issue.
In 2021, Marcus Schouten was diagnosed with bone cancer. The disease quickly spread to his lungs. After deciding to end his treatment, he lived for another two months.
That's when Schouten and his son talked about death.
"How would Marcus have taken it if he had been offered MAID? We are convinced that he would have felt abandoned, a bit like having been told that his life was no longer worth living," said Schouten.
Schouten is the director of the Association for Reformed Political Action, a Christian organization that to lobbies "to bring a biblical perspective to our civil authorities." He says his beliefs are central to his opposition to MAID.
He remembers the morning his son entered the palliative care unit at the hospital. Marcus was surrounded by family and said his goodbyes, certain he was going to die that day, his father said. Schouten and his wife spent the night with him. "He persevered, and the next morning, he was still with us."
That day, Schouten asked his son if he would like his friends to come for a last visit.
"They spent two hours together. Marcus told them it was time for him to leave, but they had their whole lives ahead of them," he said.
"It was a wonderful moment that wouldn't have happened if Marcus had decided it was time to go the night before."
Caroline Marcoux, on the other hand, wishes her son had had the option.
Charles was 15 when he was diagnosed with cancer, and after a year and a half of treatments and operations, the disease came back even stronger in January 2021.
"After that, we knew there was nothing more we could do," said Marcoux.
Seven months later, Charles's pain had become unbearable and he could barely leave the house, she says. In July, he had started to panic about when he was going to die. "That's when he started talking about MAID," she said.
"Mom, do something, I can't take it anymore," said Marcoux, recalling her son's pleas. "'Mom, when do we know we're going to die?' He was afraid of being alone."
Marcoux says he son was clear: "He said 'I want to choose when I go and how I go, and peacefully go to sleep.'"
Finally, Charles turned to the only option available to him: palliative sedation. He was given medication to relieve his suffering. It rendered him unconscious until his death.
Marcoux says she wishes he could have chosen the moment of his passing and who he was with. "When he passed, the family wasn't all there."
She says fighting to give others the right to choose gives meaning to Charles's death.
For his part, Schouten says "we know [Marcus] died the way people have died for hundreds of years in this country, that is, when God decides."
Pediatricians, lawyers take sides
Dr. Gabrielle Brodeur St-Jacques, a palliative care pediatrician at the Centre mère-enfant Soleil du CHU de Québec, points out it's very rare for teenagers to choose MAID even when it is an option.
If MAID became legal for minors, it would probably used in no more than a few isolated cases, she said, citing the example of the Netherlands where no more than 13 mature minors chose a medically assisted death between 2002 and 2018.
In her view, the cutoff age of 18 is arbitrary.
"We know that this will particularly affect young people who are suffering from a chronic disease, who have this experience that probably allows them to decide for themselves in a way that's even more surprising than some healthy adults," said Brodeur St-Jacques.
But, she says she is concerned that foreseeable death would no longer be among the criteria necessary to choose MAID.
"That's a significant downside," she said. "The end of life, for me, I believe that it must remain essential as access criteria."
According to medical malpractice lawyer Jean-François Leroux — who advises the Quebec Association for the Right to Die with Dignity — setting an age limit for access to MAID is discriminatory.
"Right now in Quebec, minors age 14 and over can decide on their own to stop certain types of life-saving care," Leroux said.
While Leroux says he wouldn't hesitate to defend a minor seeking MAID, Brodeur St-Jacques isn't sure what she would do if one of her young patients wanted to end their life.
"There needs to be some clarity, but my wanting to be with them to the end would make me question myself, probably in a positive way, to compassionately grant them access to the care they have the right to."